Transcription of Dr. Matthew Siegel for the show Autism #160
Dr. Lisa: As a physician it’s been very interesting for me to watch the way medicine has changed within the state over the last 15 years or so. One such change is a very positive one. This is the work we are doing with autism and other neurodevelopmental disorders. Today here to speak with us, we have Dr. Matthew Siegel who is the director of the developmental disorders program of Maine Behavioral Healthcare. This program is the only of its kind in Maine that serves youth ages 5 to 21 who have mental illnesses and neurodevelopmental disorders such as autism. Thanks so much for coming in.
Dr. Matthew: Thanks for having me.
Dr. Lisa: I think our conversation began when you and I met at 317 Main. I mentioned to you that it was very interesting to me that you were doing this type of work. In part because I have seen in my practice, and I know most family doctors have, quite an increase in children and adults who are impacted by autism, autism spectrum disorder, other neurodevelopmental challenges. I think it’s really great that you’re doing this sort of work. How did you get interested in it yourself?
Dr. Matthew: When I was in medical school, I encountered a person with autism, a young person. I just found myself endlessly interested in trying to understand who this person was. They had a lot of difficulty communicating. Since I gravitated to psychiatry and trying to- psychiatry is about trying to understand what is happening with people and their thoughts and emotions and relationships. I thought this was, the biggest challenge would be to try to understand that with someone whose brain is working in a different way and who has difficulty communicating.
I got very interested in medical school and began working with children who have developmental disabilities. I then did my training at Bradley Hospital in Rhode Island which has a very extensive program for children with developmental disorders including a hospital program, an outpatient program, residential programs. It really serves the whole state and as a home for those families who have children with these challenges and became really enamored with the idea of trying to provide what these families and children need. That’s what drew me in.
Dr. Lisa: When I was talking earlier about how medicine in Maine has shifted- I think it’s medicine really everywhere. Medicine everywhere has shifted. I think psychiatry has been quite a fascinating evolution over time. It used to be more therapy oriented and then it’s become very medical. Now it seems to me what you’re doing is quite a combination of these things.
Dr. Matthew: That is the case. That’s part of what drew me into it. I think children who have developmental disabilities tend to either have behavioral challenges or sometimes they themselves have the same problems or mental health challenges that the rest of us can have such as anxiety or depression or psychosis or other things. They in fact have them at higher rates than your typical child population.
It’s a real nexus of both the medical and biological and the psychological or psychiatric. That’s really what drew me, partly what drew me to working with these children. It’s an enormous challenge. The question of how do you detect and then treat and help a child who might have autism and severe anxiety is a real challenge but one that is really fascinating to try to work on and try to help.
Dr. Lisa: There has been a lot of fear and anxiety and frustration I think since we’ve seen- either we’re diagnosing people more effectively with autism or we have more people who actually are coming into the world with autism, or probably there’s a combination of those two things.
We’ve blamed autism and autism spectrum on everything from vaccines to poor mothering to infection to- you’re talking about genetics now. We really- we don’t know. What we don’t think is true at this point is we don’t think it’s caused by something like the MMR vaccine. We don’t think it was the thimerosal, the mercury preservative in the MMR vaccine. Initial studies that were put out there, they were actually found to be incorrect and I think that that information was retracted in the Lancet, which is the medical journal in England.
There’s still a lot of fear because we still don’t know and we still see all these kids. It seems like more and more of us, whether we’re Dr.s or not, are seeing these children and even adults in the community who have autism spectrum issues.
Dr. Matthew: Yeah. I think it’s unfortunately one of the great mysteries of our time is what causes autism and is there an increase in the number of individuals who have autism? The people who figure that out undoubtedly that will be an automatic Nobel Prize because it really is one of the great mysteries.
We know some things as you said. We know it appears that some things don’t cause autism such as the initial information that came out about the MMR vaccine which has been shown repeatedly to not be the case. Some things we do know, but we only know them as associations meaning we can’t prove that they’re causal.
We know that advanced parent age, both mother and father age at conception, is associated with a higher risk of autism. We know genetics is involved to some degree because the risk, if you have one child with autism then the risk of having another is much higher than if you’ve never had a child with autism. Also specific genetic changes can be identified in about 25% of children with autism currently. That number keeps going up every year slowly.
There’s other things that have been associated. It appears that low intake of folic acid has a small risk associated with it. Obesity during pregnancy has a small risk associated with it and a number of other things. However, they all have small risks associated with them. Nothing has really come forward as being the leading thing. It may be the case that either we haven’t found it or it may be that autism can be caused by a number of different things or a combination of things and that the story, unfortunately, is more complex than we would wish that it is. We have to keep working at unraveling it.
I think some of the challenge, which I think you referred to is is that any time we have an area in medicine or in life where we don’t understand it well, what causes it, and it creates a lot of need, then there’s a lot of searching about for answers. That’s understandable, but just like in say something like fibromyalgia, which we don’t understand well and we search for lots of answers for. Unfortunately it also brings the risk of people putting forward very very probably unlikely theories and then treatments based on those theories that may or may not have any evidence or validity behind them which can then develop some concerning situations.
Dr. Lisa: For individuals who are listening who don’t have family members with autism but might be exposed to somebody who has autism, say a child in school or a member of the community, what are some things that we can do to be helpful?
Dr. Matthew: I think what some parents tell me is just trying to have an understanding that if a child is having a hard time in Walmart or at the grocery store or such that- I think many of us, the first thought might be there’s some bad parenting involved or other … but that there are quite a- there’s quite a number of children who there may be another reason. Just, I guess, trying to be understanding to what the situation is that’s going on. You may or may not know what’s going on with that child but at least considering that there could be another reason that a child is struggling and trying to be understanding with that.
I think that also what I hear from parents is extending that is they would like to have settings that understand their children better. We can ask a stranger in a store to just try to be somewhat understanding, but in settings like medical settings or educational settings, really there we should be well aware of what’s going on and providing an appropriate environment.
I think that’s part of what we’re particularly excited about with developing our new outpatient center is this is going to be a place where one of our goals is for families really to feel at home and to feel like these people get it. If my child’s having a meltdown in the waiting room that that’s actually expected and not a problem for us or for them. In fact that’s why they’re there partly is for us to help them. That vision of providing a home for people and families who are already dealing with some very challenging situations is I think part of what we’re really excited about.
Other things that people can do I think is just- I think it’s helpful just that the awareness has gone up around autism and other developmental disabilities. Certainly people can also donate or volunteer with organizations whether you’re supporting research which is very important, or other volunteer organizations such as The Autism Society of Maine, which is a wonderful organization. It holds walks and other things. Those are other ways to be involved.
Dr. Lisa: It is a very stressful situation for families. I have many- I have much experience in my medical practice with families. Parents will often have to stop working to care for a child or greatly reduce their work hours, dramatically change the way that they interact within the family. It impacts not just the child with autism, but it impacts other siblings who don’t have autism but don’t maybe get quiet as much attention as they once did.
As you said there’s a lot of different appointments people have to go to. It’s a financial burden, it’s a social burden. It really, I think, speaks to this greater need for compassion as you’ve said. It’s not really- autism is a funny, funny thing because you can’t tell necessarily by looking at somebody who has autism that they have this issue so it’s very easy to judge. If you can take a step back and realize that it’s not as straightforward as all of that.
I’m really glad that you’re doing this work because I was thinking about, before you came on the show, I was thinking about the time I spent as a medical student at Maine Medical Center and some of the patients we saw in the Acute Psychiatry Intake and how many of them were families. Many of them were extremely stressed and they had already been to an emergency facility outside the state and traveling back and forth to try to see their child. I think the more that you can create this normalized situation, the better of really all families and the community is going to be. It’s not a long term solution to ship our people elsewhere. They’re all going to eventually end up on our community so we’re better of trying to understand this now and work with them now.
Dr. Matthew: Right. I think it takes a great deal to do that. It’s about developing the systems of care that we can even in a smaller state like Maine. To do that we need the support of the population, the legislature. Most of these children and families are utilizing Medicaid. A portion of that is paid for by the state so having the support of people to provide that care is a key piece of what we do and what these families need.
Dr. Lisa: This brings up lots of different questions that I have. I know that people who are listening will be interested in how they can learn more about the program that you have through Maine Behavioral Healthcare. Dr. Siegel, what’s the best way for people to get this information?
Dr. Matthew: I would say to look at our website which I believe is www.springharbor.org. There’s also a Maine Behavioral Healthcare website as well. There you can see information about our current programs. Soon we will be building out the web page for this new center that we’re developing and opening in late fall of 2014. There they’ll be able to see how to access the resources at that new center.
Dr. Lisa: I’m really excited about the work that you’re doing. I give you a lot of credit for knowing that this is the path you wanted to follow when you were a medical student. It’s important that we do things that we feel passionate about. That’s the only way that we’ll be able to make changes. I appreciate your doing that.
We’ve been speaking with Dr. Matthew Siegel, the director of the Developmental Disorders Program of Maine Behavioral Healthcare. I can’t wait for your new center to open. Thanks so much.
Dr. Matthew: Thank you. You’re welcome.
Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast show number 160. Autism. Our guests have included Dr. Matthew Siegel and Alice Chaplick. For more information on our guests and extended interviews, visit D-O-C-T-O-R Lisa.org.
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